Just trying to sleep and I find myself trying to envision my Dh before AD began to destroy the man I love. I think of the strong, capable man who could construct or fix anything. Now he can no longer hang a picture. He was the one who loved to take car trips and could drive us everywhere. Now he sits in the passenger seat. He loved to shop and cook dinner for me. Now he forgets he used to make oatmeal or a soft boiled egg. He cannot use the microwave, leaves the gas on and can't use the oven. I miss the spring in his walk as his gait is slower. What happened to the man who used to converse with me? I try to hear our voices in a conversation. I picture us deep in conversation in Starbucks over a cappuccino. Now we drink in silence or disjointed thoughts that I must try to figure out. We used to talk about all we would like to do in the future tense. He just told me in detail all about the house he grew up in.
So I cannot find him downstairs. So I lie in bed , close my eyes and try to remember the man I am losing. Does anyone else feel this way? Tears are falling. They feel good. I am so used to holding them back all day.
Oh Lorrie I remember that feeling well, not just with this dh, but my first dh who died young. I have only been married to this dh 13 years, and have watched him grow old so fast. He is 82, but was very active, as you said he loved to drive, now sits, he enjoyed eating, now he can't tell the names of the food he is eating, it just goes on. Sleep well and sweet dreams. Bonnie
yes, lorrie - memories of the old hb are hard to come by. About the only time I can remember somewhat is when something needs done. He was my Mr. Fix-it. He also did all the driving. Every once in a while I will find myself wanting to go to the passenger side and then remember I am the only driver now.
I try not to dwell on what was cause it is too sad.
I miss my husband so much. Friends and family say "Oh, he's doing so well", and he is and I'm grateful, but it's hard to explain how much it hurts to live with someone who looks like your love but is in fact often a stranger.
yes, lorrie, I do remember the man my dh used to be and it is heartbreaking for me. He always had a twinkle in his eye, loved to laugh, always ready to travel and a new adventure. Sure he couldn't fix a thing in the house or the car, but we could always have someone do that. He supported my work choices and never complained about the hours (very long) I worked and would often have dinner ready, even at 10:00 pm! As my RA progressed he would always just quietly help me button a blouse, zip a zipper, whatever without me ever having to ask. We were (and still are) best friends. I miss him so much, but these memories do help me keep going and caring for him because I know how much he loved me and me him.
I think this type of reminiscing is just part of the letting go torture that accompanies years into the AD process. I know I went thru these terrible bouts of crying jags off and on during a lot of the mid stages. its when its more noticeable the downturns and changes of loss. not to appear callus but in time you will move to a new area of thoughts about your relationship overall. and begin to remember the good times and memories again. the distraught thoughts go along with being depressed ourselves. its a process in a way to help ourselves understand and work thru the pain of losing our spouses slowly over a long time. its not easy but in my opinion necessary to go thru these devastating periods where we contemplate the losses now and in the future. not easy for sure. but in the end its necessary to heal. hugs. divvi
Thank you all so much for your posts. It helps so much to not feel alone in my thoughts.
Bonnie. I , too, am married 13 years.. My husband is 66 . He was so young and active. We had so many dreams for the future. Fortunately, he is not aware they are lost.
LFL At this stage, I still have his love.. I can't imagine losing that too.
Ring I miss him too. Yes, others will never know how much. Amber I hope things get easier for you.
Charlotte I usually try not to think about it because it is soo sad but as divvi said it is part of the process .
It is so painful that I often just shutdown my feelings to get through each day. But, occasionally it all just overwhelms me when I am by myself usually with my head on the pillow. Often, as he sleeps next to me.
My husband went to flea markets every weekend and had many collections,junk to some people but he loved it.I can't stop the tears when I look at all the things he loved and now cannot enjoy themThe children say to get rid of some of this stuff. but I just can't.He loved his dog so much and now doesn't even remember her.And she misses him as much as I do.It is hard to live all alone but have so many memories around you.
He's gone a year and half and I really can't remember. I have photos all over the house of when we were so happy and having so much fun. That's how I remember him. I have happy times everywhere. I love looking at him, he was so handsome. In a few short years he got smaller and older. It all happened so fast. Oh, I think I think I'll go kiss the photo I have on the fridge right now.
I've pulled out a large box of old photos, thinking that my hubby and I could go through them together, get rid of anything that is not important, sort what is left and do some reminiscing while we are at it. A nice project for the winter months when there is no good reason to step outside the door. Well, I started looking at some of the pictures - the handsome man I married almost 37 years ago who loved travel, good wine, fine dining. The man who used to cook gourmet meals for me (as long as I was willing to clean up the kitchen). The man who could have an intelligent conversation with anyone about anything. And I look at the shadow of the man sitting in his chair in the living room, who can't cook anymore, and takes all day to do the dishes, who can't converse with anyone for very long about anything, who two days ago kept getting his fork and his knife confused as he was trying to eat his dinner. And I still love him, and I know he loves me. And it is so hard. And yes I cry too.
Ocallie36 I hear you. I lost my sweet man just a little more than 2 months ago. I too have his pictures on my fridge, in the family room, tucked here and there on bookshelves, one triframe picture of him in the kitchen in front of his air craft..his prop plane, his A-4 and when he got his bottle of champaign for his 300th fixed wing combat mission in Viet Nam...and there are so many others. I do look at the photos of the man who was once wearing his chef jacket and that goofy hat chefs wear, the picture of him in his flight suit as he dragged a bed sheet behind him on Halloween one year, going to a neighbor's house for trick or treat and oh by the way can I use your phone I just punched out of my A/C.. the pics of him putting in our sidewalk pavers and building the little garden wall, working on the cars, doing all the things I now have to learn how to do. I have found all the letters and cards I gave him over the years, he kept them all! ( so have I ; 0 ) and found little notes he left when he took messages even recently. Yes he had dementia of the ALZ type but that is not what stole him away...it was cardiac disease and suden cardiac arrest.. For as much as I missed " the good old days" when he was here with me though he was in decline, it is nothing compared to the emptiness now..before at least I could see him, the twinkle in his eye and his jokes and he would still whisper "sweet muffins" in my ear....now all of that is gone, memories are all that is left. I hear you all and understand well how you are feeling, it is a terrible thing to watch this loss happen before our eyes...try to focus on what is still there and find some joy in that if you can.
As I read through these comments, it brings tears to my eyes. It's kind of bittersweet for me. D.did almost everything around the house, he loved to drive - would take me anywhere i wanted to go. He's been faithful to me, very easy to get along with (in his younger years). On the flip side, he was never a "romantic', never wrote letters, maybe a card on a special occasion. Never left little notes (I finally gave up on doing that for him - a looong time ago!). He didn't cook, didn't like to converse on a more intimate, emotional level (to be honest, he probably couldn't). He hasn't been a "cuddler" or a comforter. I try to remember him when I was so in love with him, but the disappointments seem to overshadow. At least, for right now, anyway. All I'm able to see is the little old man he has become. Wow - didn't expect to write all that! It just came out....
Mim - your husband sounds a lot like mine in many ways: "On the flip side, he was never a "romantic', never wrote letters, maybe a card on a special occasion. Never left little notes (I finally gave up on doing that for him - a looong time ago!). He didn't cook, didn't like to converse on a more intimate, emotional level (to be honest, he probably couldn't). He hasn't been a "cuddler" or a comforter." Unlike yours, mine was not faithful and had no regrets for not being.
But after 42+ years there has to be something good I can dwell on and that was he liked to travel (but never stop to see). He was Mr. Fix-it, loved working in the yard. We did a lot of camping and fishing - until the kids left home. Then never wanted to again. Weird is the best word.
Charlotte, maybe expectations were too high - although I don't remember having expectations at the time. Just very much in love & wanted to marry him. Sometime, I'll have to share my "oh so romantic" marriage proposal :) He wasn't (hasn't been) a bad husband - I guess I would say just kind of inadequate in personal relationships. Oh, I don't know (sigh) - most of the time I just try to focus on the here & now. Maybe I'm softening!!
My DH was a wonderful partner and husband; quiet, supportive, thoughtful, and more romantic than I. While I would make decisions on the spur of the moment, he was always more deliberate in his thought process (sometimes painfully so). The man read software manuals cover to cover, for goodness sake!! Today he lives in an ALF, after 5 years of me taking care of him at home. I do not regret placing him into a Memory Care facility, because he has finally found a measure of peace and contentment (not needing to escape, no sundowning, little agitation). However, I find myself now reliving the moments of our life and realizing how thoughtful he was. He always picked out the perfect card for me, whereas I mostly forgot to get a card. To my credit, I did buy the presents and fix the special meal. He said and did sweet things that I barely registered in the flurry of everyday comings and goings. Just now do I replay those moments and regret, just a bit, that I did not respond appropriately. Then I sit back and remind myself that, overall, I showed my love and appreciation for him every day. I believe he feels that love and appreciation even today.
While time away from the daily grind of caregiving has given me perspective to see our life from afar, I refuse to beat myself up (much) for things I may have forgotten to say or show. I realize that is a waste of my energy and just renew my efforts to show him today and all of the tomorrows I have with him how grateful I am for the gift of him in my life.
When my father died last December, we went to my step brother's house after the funeral. He brought out a big box of pictures, most from 30 years ago. As I was looking through them, I started to cry, and said -I miss him so much. Naturally, everyone thought I meant my father. But it was the pictures of Sid, standing tall, young, and bright eyed, that I was referring to. Although I had been saying since the beginning of this damn disease that my husband wasn't my husband anymore, and I missed my old husband, I hadn't truly realized how much he had changed until I saw those pictures. I don't mean in age - of course he looked very young in a 30 year old picture. It was the bright eyed "with it" look that had changed so dramatically. He is so blank now that I do forget the intensity that used to be in those eyes.I'm getting sick thinking about it.
Just need to share this. The years of long days and nights took such a toll on my memory of my guy. I couldn't really focus on the way he/we used to be, as I was consumed with getting through the days and hours of living with this disease. No need to explain more, as each of us 'knows' what I'm talking about.
Now that he has been gone for ten months, I am suffering a different type of mourning, and missing him so. I have put pictures up and around of our lives together that were good memories we shared, and for some reason, those memories are foremost in my mind. The years of struggling seem sort of compressed into a “sick time” ...and packaged in my memory that way. Could have been ten years or just a few, they are now a compressed package, and horrible memories that unless I dwell and think on, just don't enter my mind as much. (A tender mercy I suppose).
Now I am trying to overcome the loss of the guy I knew and loved and shared my life. I didn't expect this, as I thought I was just going through a long mourning process during the disease years. This is so different. I don't want to share any more of my journey just yet, as I'm just not fairing as well as I want. But I will. Just know that I believe your memories of the lives you valued together will be restored.
janny*, I just popped on here and saw you had posted, so long since we heard from you. I have been not posting much, just too much going on right now I would have to start a whole new thread, just not ready.
But THANK YOU SO MUCH for telling us that. I often look at my Dado, and wish I could just always remember his "old ways". It has only been three years this Dec. 10th since his diagnosis, he was still working, walking, driving, talking. Now he does none of those things, just sits in his wheelchair, picks at his napkin, and often cries.
to know, that there will be a time, when I can often think of his old self is so encouraging.
He was a servant, is the best word I can come up with for him. Always giving to everyone, cooking for them, trying to slip them a little money, -in a way he overdid it but hey!, I loved him for his caring heart. Even now he will take his napkin and try to wipe the table clean, just to help.
I am sorry you are so sad janny*, you have been such a cheerleader to me and I will never forget that. I only wish there was some way I could make you feel better.
thanks to all these wonderful stories, from all of you.
Lorrie, everything you said at the beginning of this thread so resonates with me and I know for many others. We are only two years into this journey but my husband is declining rapidly - I don't know why some seem to coast/linger for many years and others go downhill so quickly. Some days I feel like screaming to nobody in particular 'what have you done with my husband, please bring him back'. He can barely do anything now and was an extremely capable lawyer - one morning last week he put his oatmeal in the microwave and must have entered 20 minutes instead of the usual 2 minutes - I was in another room and soon noticed a burning smell. I went to the kitchen to find smoke coming out around the microwave door and the oatmeal inside was a charred disc in the bowl! Thank goodness I was home.
It is such an encouragement to know you are not alone in this - even though some days it feels that way.
Your DH sounds similar to mine. He has declined a great deal in the past year since diagnosis of Ad. Although, I now know there were many signs for at least a few years before.
He can't use any appliances properly and/or safely. He randomly presses buttons on the microwave. He has boiled over ice cream in a flammable carton before I smelled it.
It does help to be a part of this group. We understand each other and by sharing our experiences and pain we find comfort.
Welcome but sorry you are on this road. Keep reading and posting.
Divvi, you said that so well! It happened this way for me too. I think when we are in the middle stages, it is just too painful to remember who they were, who we were together. I could remember, it just took too much out of me, so I didn't let myself "go there"
As I mentioned in another post, I was in mourning for about 18 months after placing Lynn. It has now been 4 years, 8 months. It happened slowly for me, like gentle waves the memories came flooding back soothing my broken heart. When I look at Lynn now, late stage, it is the man I married I see. I can still see him reflected in those beautiful eyes....
Truly, I have to work to bring the hell of the middle stages to the forefront of my mind. I hope in time you can all be comforted by your happier memories. ((hugs))
truly said Nikki. I am at the place where it just hurts too much to think back, even such a short time ago. When I start to remember how he began to change, it just makes me sick. Just holding on now., to who he is now. My helpless little man that still reflects a gentle loving soul. He was just too darn nice and handsome and wonderful and close to perfect in his before life, I am putting that on the shelf for now.
Even after his death, this is the push and pull of everyday life for me.
I am very sensitive to triggers; sometimes a song will do it. I am currently reading a book (which I have rarely done during the past few years) by a NYC restaurant critic. He and I met there and spent our first few years there and it is full of triggers. So are my dreams where he appears not necessarily before FTD but before everything was taken away.
Sometimes I awake missing him, sometimes I awake feeling relief, sometimes I think for a brief moment that he is still in the house. The most difficult, but the most emotional times happen when going through his stuff. I have prepared a huge box that will go to a charity that has pick ups later this week. I folded things nicely but with each suit and tie, most which marked various steps on his long gone success, it all came back.
This is on top of doing last years taxes, the year he died and all those medical expenses. I am tempted to say "you can't imagine" but of course you can!
Lorrie, ....Yes you have the sweet memories, and even though he's not the man he used to be you still have the sweet man you married a long time ago. ....As for me, the memories are all that I have, But I have one regret that keeps haunting me. I wish that I had been more affectionate with her , and given her more hugs and kisses during the last stages. ....Even though she was not the same, she was all that I had..........GeorgieBoy
I have been with my husband since I was 15 years old and he turned 66 last month. We have been dealing with this horrible condition since 2009 and I WANT MY HUSBAND BACK. I am emotionally, physically, mentally and spiritually bankrupt. I am just so tired and at a point that I don’t know what to do next. I have his name on a list for Extended Care but that has problems to but that I will take one day at a time. I have no local support and now have the problem with talking on the phone. The minute that I get on the phone he does the little kids stuff like peeing on the floor just to get my attention back to him. He reacts to every noise, coughing and he’s asking what are you doing getting up to go out of the room, he wants to know where I am going. Its question after question and some days its hard not to react to the same thing time after time. If I try to take a nap, he’s constantly waking me up and asking if I am dead yet. The sixteen hours a day with him are very hard and stressful most days. Even to now to go and visit friends or family which is a hour and half drive, we just get there and he wants to come home so I am at the point that I would rather just stay put. I am off work for stress leave but just the way he is I can’t see myself going back. I turn 65 in December and my pension will kick in, in January so I just have to hang in until then. I am not looking forward to the long cold winter that we have in northern Alberta. He does have one enjoyment. We do live in town and our deck is surrounded with a lot of spruce trees thus we have blue jays, squirrels and deer. He feeds peanuts to the blue jays (he calls them his girls) and squirrels all day long. I figure that it is a good investment because it gives him something to watch and do. He can do nothing to help me anymore except take out the garbage but on his terms and he takes the laundry basket upstairs for me but this is better than absolutely nothing. He is at the point that he can’t even get himself anything to drink. He is getting to the point of total confusion. He will go into the kitchen and just stand there and if you ask what he would like he says I don’t know so it is a guessing game to figure out what he wants. His speak is very limited. This is so ironic as he was an Auctioneer and the first thing to go with him was his voice. Funny though, he still remembers how to swear at the commercials on TV. Sorry about the rant but I had a very bad night with him and really needed to vent.
(what a pretty name) My husband also had a lot of issues when I was on the phone. I tried to do as much as possible with email. He became reluctant to cross into the kitchen because the flooring changed and the kitchen led to the pantry and that led to the garage. So, what I usually did was take my cell out to the garage, lock the door behind me and sit in my car to make calls. I would sometimes sit there and listen to music just as a stress break. I would also take with me the security system panel so if he attempted to open any door I would have the audible chime as well as the light indicator to alert me.
I realize this is very specific to his behavior and the house set up. Just the constant thinking and planning is exhausting in itself.
BTW my husband also enjoyed birds so I hung some feeders where he could see them from his bedroom window. It gave him some pleasure...
No apologies- sometimes reading and posting here are all that we have!
It is truly bizarre how events can change our memories. I have never seen a good explanation for it. I do feel compelled to tell you about another change that will be forth coming (happened to me anyway)
After my wife died I stopped remembering the AD(!) I remembered her as the capable person that she WAS. Sounds good, but then as I forgot the Alzheimer's symptoms I became confused about where the prior years had gone. Why didn't we do anything together? Why was I so tired? Why did I have to pay somebody to watch her? Did those lost years really happen?
I posted about it before but I will say it again. After she died I found on my computer a picture snapped accidentally of her contorted, confused face during one of those panicky moments that only somebody who has seen or lived with AD would understand. Certainly not a good photo, but I put that picture on my dresser and looking at it every morning for the first several months after she died. I was then reminded of WHY she died. It helped me remember that at the end she was NOT the normal person I married. The past five years were not a bad dream but it was a real event. Seeing that picture brought me a strange type of comfort. I have not idea how or when it was taken but I am glad that I had it.
After a few months I have now placed the picture into the family history file. My grief is subsiding I can put things into perspective. . . .
I mention this as a suggestion to perhaps take a few images now to illustrate what you are dealing with on a daily basis. Because after it is all over you will want to have only the good memories, BUT you might also want a reminder that it was not all just your imagination. It was helpful to me. Jim
Velvet, I am sorry you are having a rough time of it. I also take the telephone outside - its going to be tough with winter coming but its the only way I get any privacy. And we also have a bird feeder where dH can see it from the dining room table - it is great entertainment for him, and costs little. Although the squirrels do like to take more than their fair share! :-) Hugs
Velvet, I am sorry you are so stressed and tired. We all understand what you are going thruogh and send you hugs for strength. It is a really hard task to come to grips with each new change..and loss..and we all have said what you have.. Hang in there. You ARE doing a magnificent job, all of you are and all of us with a * have too. Blessings
velvet vent away! its comforting to get it off the chest. so many things add up during a day that by the time we hit the bed, we are overly wrought and so stressed out. the talking on the phone is common and so many of us have dealt with that. they interrupt every time you try to get on the phone. so frustrating. my DH would talk an incessant chatter right next to me making it impossible to hear. and then he would stalk me and spy on my every move with binoculars.. egads. it was very creepy. even from a few ft away he would look at me. very unnerving to say the least. :( so yes there are plenty of unfortunate things they do along the way that can drive us crazy if we let it. try to find some place you can relocate and take calls -maybe in the bathroom with door locked. tired and stressed is an understatement when they are mobile and able to get into trouble.
I woke at 5am. I was having those pre-dawn thoughts when you wake up and instead of going or just rolling over, you start thinking and you're not going back to sleep. So I read this good thread about others being in the same life altering room as I am where there are a lot of good comments and a lot of experiences I keenly relate to.
Divvi is right that 'tired and stressed is an understatement when they are mobile and able to get into trouble'. And as Jim said when we have pictures or movies of them during this time it may help later to see the Alzheimer's for what it is.
I remember my wife. Now so hollowed out and trying to swallow. Then when she was home with me (by far the most painful years of memories where in our case the lost skills and lost aspects to personality piled up monthly without stop). And before where she was a vibrant, caring person loved by everyone who met her - disliked by no one. You would all have loved my wife because every last person did.
But I kept journals. I have lots of photo albums. And I'm critical about ideas. I have memories of her I love, and I have memories of her that are part of our story, and some that make me roll my eyes; and I find so many inconsistencies in them I just let a lot go. There's nothing like reading page after page of your own 40 year old journals spelling out every intimate obnoxious feeling and thought I had to disrupt the Walt Disney Productions aspect.
I loved her. I loved her like nobody else ever. We did things and went places neither of us dreamed of in several areas of life. In all the 40 years we were true to each other in what mattered to us.
I can tell no better story than one I've already told here to know us where very late one night we were driving when I slowly came up on a transport that was weaving every so often. My father drove transport for a time. I knew what was going on. I woke Dianne and told her what I wanted to do. Dianne was a modest person. She had just woken up but she saw in my face I was serious.
We pulled up beside the truck and I stayed right beside the cab. My wife rolled her window down and stuck her lovely breasts out as best she could. The wind was amazing I remember. When she rolled up the window I took off. The transport flashed his lights repeatedly thanking us and I flashed our lights back. She went back to sleep but the driver of that truck wasn't falling asleep any more. That was us. Always out there - but in a good way.
If that's me in there instead staring at the ceiling with my mouth open, the first thing is thank you thank you thank you for looking out for me. The very next thing is I don't give a flying what she does - I just really, really want her to be happy - still, again. And the third thing is you can't help me anymore than you are. Please help yourself. Please take care of yourself. Please feel good.
I have zero doubts she feels precisely the same way. And I feel exactly like a WW2 vet who was at Pearl Harbor that day. I lived that time with her and you weren't there so you don't know. Only I know. That truth is always and immutable.
If I am out there bopping around finally again then I am true to us. Full stop.